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Mom of a newly diagnosed daughter

Hi all. I'm so glad that you're here. My daughter (16) has just been diagnosed, althought i must say i suspected it as we began to go through tests, etc and i did my research. She has missed most of her second semester at school, has had to take a leave from her job, has lost touch with her friends. Luckily, though she is sad and feels awful, she hasn't become depressed. I am counting my blessings for that. Anyhow, I am overwhelmed and scared - what does her future hold? She was started on Plaquenil about two weeks ago, so we aren't seeing any results yet, but am relieved after reading through some of your posts that we can probably expect some relief with it. I don't even know what to ask at this point. I guess one thing is are there any hollistic apporoaches we can take, in addition to the medication route? Our family physician has promoted exercise, and i got her a yoga CD from the library. She said that this felt quite good, and she has done it for several days. The doctor has also promoted swimming. What about massage or hot tubs? I am just searching for something that may give her some relief from the pain. The fatigue, i realize, is another matter. Also, do any of you who have been diagnosed also have family members with autoimmune disease? i have thrombocytopenia, and i'm wondering if there may be any connection. the neurologist said possibly. Anyway, i look forward to hearing from you all, and so appreciate any guidance you can give me.

Hi, cherylm2434. It's so sad that your daughter is diagnosed so young...but not uncommon, as I'm sure you know. Many people are not diagnosed until many years after the disease has appeared - often it looks like something else, and doctors have hard time pinning it down. Yes, plaquenil will help - particularly with fatigue. But, alas, it can take months to really begin it's 'magic.' Holistic? Well, the jury is out on that...many on this forum use supplements and other kinds of treatments. I'm sure they'll chime in. It's important for her to eat a low fat, healthy diet, to exercise (in moderation) and to get plenty of rest. Avoiding stress is important, too. If she is subject to fevers or rashes, a hot tub may not be a good idea. Others may have a better perspective on that than I do, however.

Lupus is not technically hereditary, but it is seen in families. Check out the lupus foundation website (www.lupus.org) for a lot of info about that and other things.

Welcome to the 'family.' I hope you find support here...I know I did!

Jody

"If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

I would like to welcome you as well cherylm. I am so sorry your daughter is going through this. My symptoms first appeared at the same age as your daughter, but was just diagnosed in Jan, nearly 20 years later. I also just recently started doing yoga, and while it's difficult to do some of the poses (I can no longer even bend over to tie my shoes), my doctor feels it will be very benefical in the long run.

I would think a massage would help her, if nothing more than the wonderful feeling you get from such an indugence. I do not know if most of her pain is in her legs or else where. Mine at that age was my knees and later my hips. I found soaking in a nice hot bath was sometimes the only thing to relieve the pain if only for a short time. Also rather than using a heating pad which was way too small to put on all the places I hurt, I use a heated throw. Very good to wrap around the whole leg rather than just covering spots. Also pedicures are very relaxing. The nerves in the foot are pressure points for other parts of the body. When you get a pedicure they massage your feet also and it's a wonderful feeling.

I have one of those plug in foot bath/massager. I love it. I also use http://www.comfortchannel.com/prod.itml/icOid/9465 in my tub. You can move it around. Conair also has some mats for sale that act like a whirlpool. That way she can control the temp of the water if rashes are an issue.

I completely understand what she's going through... every job i've ever had fired me because of call ins from being sick... I ended up having to drop out my senior year because I got so sick... and it was to late to go back to school i had already missed to many days... I couldnt afford summer school... and this school year I had to do the same thing... I'm so sorry to hear about your daughter... that is very young... I was 12 when I was diagnosed... I'm prescribed plaquinel also and at the end of this month I dont know how i'm going to get it when i run out... You should try to get her on disability... I dont know if you have her on medicaid... id suggest trying now because they'll most likely deny her I was denied twice... and now i've hired an attorney to fight this appeal i'm on now... I've lost so many friends behind SLE also... I'm to the point of mental break down... so please try as soon as you can to start getting her disability cause once medicaid stops her its so stressful.

Hi all and thanks for your posts. i find it very helpful to know that what she's going through is "normal." However, it's kind of disheartening at the same time to know the long term effects of what she's up against. It's been a really bad couple of weeks for her, and subsequently for us, too. Thanks, again. This forum will be a real God send in the time to come. Take care, each of you, and feel well.

Hi Cheryl,
I am so sorry to hear about your daughter. I am a long time survivor of this illness. I will be 50 in December. Like Beezybaby I was forced to leave school in my senior year. The school told me that because I could not get the rash cleared up on my hands and feet that I was posing a health hazard to the staff, faculty and students, so therefore I had to leave. I left school and took the GED and passed it with the highest grade in the state of NY for the previous 5 years. The Albany State University sent me a letter along with my diploma and told me that I was qualified to take any course that they offered, but I was to sick to take advantage of it.
Your daughter should do ok. They have a lot of different medications that will help her along the way. You see Lupus is cyclic big time. The Plaquenil takes a good 6 months to kick in and work. I have been on it for years and it still helps. I wish you and your daughter the best. God Bless and welcome to the forum.

Hugs,
Kathy

Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

Hi, Kathy...thanks for your post. It's great to hear from so many people who have been living with this for years - of course i'd rather hear you all say that it was no big deal and that it hardly impacted your lives at all, but of course that's not the reality. It is good to know that there is life in spite of this insidious disease. I'm especially grateful that you have all said that the medications, given time, do work. We're waiting anxiously for some effect but realize that we have to have patience. I took in the note from her rheumatologist to the school yesterday so she could be exempt from writing her exams, so basically her school year is over. That will relieve some of her stress, but she is very bored, tired of lying around and watching TV and reading. She's also become rather frightened to be alone, especially at night, as she seems to be having some very vivid and unpleasant dreams. I don't know if this is disease related or more stress. Anyhow, thanks again, so much, for your responses, everyone. As many of you have posted, very few people realize what this disease is and how debilitating it is, so it's nice to have somewhere to vent and not have to explain...God bless.

I would like to be of help anyway that I can. Plaquenil has side affects, but in time they tend to deminish. I am wondering is your daughter on Prednisone? Prednisone has dream side affects too. Just hang in there, because it takes a good 6 months for the plaquenil to kick in real good. I am so glad that you found this sight.

Hugs,
Kathy

Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.